Cancer Fatigue: Tired of Being Tired

When I talk to the doctors about my fatigue, it feels like the doctors nod sympathetically and then metaphorically pat me on my head and send me on my way. The exams, tests and blood work have been completed. There is nothing tangible for them to treat. But, hey, I am tired, and I am sick and tired of being tired.

"The experts" say fatigue is a common, lingering side effect of cancer treatment. I am almost five years out and I have talked to other breast cancer patients that far out who also struggle with fatigue. What’s the deal? What is the answer? Is there an answer? Do other survivors struggle with this too?

One breast cancer survivor told me she was still "an exhausted mess" at four-plus years out from her diagnosis and treatment. She told me she was amazed that I had the energy to write a cancer help book during the time right after active treatment. In the end, she did say she thought her fatigue got gradually got better for her after four years or so. I am five years out from breast cancer and a year out from melanoma, which has only been treated with surgery and frequent biopsies. I will wait and see.

Experts suggest healthy eating and exercise to combat the fatigue. That makes good sense to me, but sometimes the exercise just wears me out even more. Where is my energy? Where is my reserve? How do I distinguish between age-related issues and cancer or cancer treatment-related issues?

Sometimes I start to question myself. Maybe I am just lazy? Is there something wrong with me? I recently pushed myself for several days straight in my daughter’s newly purchased condominium. We ripped out stained carpet and removed wallpaper from several rooms and cleaned. I worked. I sweated. I worked. Often, I found myself curled up in bed afterwards having a late afternoon nap, heading back to the condominium for more "fun" and then sleeping soundly all night too. Some days I felt too tired to lift my arms. No one else working on the condo projects (my husband and daughter) needed a nap. What’s the deal with me?

Where does the exhaustion come from? Is it the chemotherapy and radiation and surgeries? Is it body changes because I also had my ovaries and uterus removed? Is it hormonal changes from my anastrazole? Is it fatigue from the lingering stress and fear of cancer recurrence? Could it be a combination of some or all of the things above? I don’t know.

I do try to be gentle with myself. I get plenty of sleep at night. I pray. I take naps. I take breaks. I drink coffee (high in antioxidants). I exercise by taking walks when I make the time to do it. I try to make healthy eating choices, but sometimes I don’t. I meditate and focus on nature when I need to also. I use distraction like a fun event or a fast-paced movie or a project or a good book to get my mind to a different place. All of these things help. None of these have really taken away the lingering fatigue or the late-in-the day shakiness that I still sometimes have.

I continue to try to pull myself forward every day. I am happy and grateful to be here — don’t get me wrong — but I am just so tired of being tired. Do you have fatigue too? How do you address your fatigue? Let’s share and help each other through this.

When I talk to the doctors about my fatigue, it feels like the doctors nod sympathetically and then metaphorically pat me on my head and send me on my way. The exams, tests and blood work have been completed. There is nothing tangible for them to treat. But, hey, I am tired, and I am sick and tired of being tired.

"The experts" say fatigue is a common, lingering side effect of cancer treatment. I am almost five years out and I have talked to other breast cancer patients that far out who also struggle with fatigue. What’s the deal? What is the answer? Is there an answer? Do other survivors struggle with this too?

One breast cancer survivor told me she was still "an exhausted mess" at four-plus years out from her diagnosis and treatment. She told me she was amazed that I had the energy to write a cancer help book during the time right after active treatment. In the end, she did say she thought her fatigue got gradually got better for her after four years or so. I am five years out from breast cancer and a year out from melanoma, which has only been treated with surgery and frequent biopsies. I will wait and see.

Experts suggest healthy eating and exercise to combat the fatigue. That makes good sense to me, but sometimes the exercise just wears me out even more. Where is my energy? Where is my reserve? How do I distinguish between age-related issues and cancer or cancer treatment-related issues?

Sometimes I start to question myself. Maybe I am just lazy? Is there something wrong with me? I recently pushed myself for several days straight in my daughter’s newly purchased condominium. We ripped out stained carpet and removed wallpaper from several rooms and cleaned. I worked. I sweated. I worked. Often, I found myself curled up in bed afterwards having a late afternoon nap, heading back to the condominium for more "fun" and then sleeping soundly all night too. Some days I felt too tired to lift my arms. No one else working on the condo projects (my husband and daughter) needed a nap. What’s the deal with me?

Where does the exhaustion come from? Is it the chemotherapy and radiation and surgeries? Is it body changes because I also had my ovaries and uterus removed? Is it hormonal changes from my anastrazole? Is it fatigue from the lingering stress and fear of cancer recurrence? Could it be a combination of some or all of the things above? I don’t know.

I do try to be gentle with myself. I get plenty of sleep at night. I pray. I take naps. I take breaks. I drink coffee (high in antioxidants). I exercise by taking walks when I make the time to do it. I try to make healthy eating choices, but sometimes I don’t. I meditate and focus on nature when I need to also. I use distraction like a fun event or a fast-paced movie or a project or a good book to get my mind to a different place. All of these things help. None of these have really taken away the lingering fatigue or the late-in-the day shakiness that I still sometimes have.

I continue to try to pull myself forward every day. I am happy and grateful to be here — don’t get me wrong — but I am just so tired of being tired. Do you have fatigue too? How do you address your fatigue? Let’s share and help each other through this.

Thank you, Thank you, Thank you! While I am in Stage 4, which means constant treatment, the only warning sign I had from retrospect was being so tired I could barely function. Then adding in the on going treatments over these 13 years, and am more and more tired, washed out, Raggedy Ann, etc. It also makes cancer boring. As a 50 year Social Worker, with 15 in an inner city hospital, I have to say I have been expecting too much from Oncology. It comes down to them focusing on the cancer cells and how the chemo is working on it or not. The only side effects they seem to respond too are nausea , constipation, diarrhea. Taking a written list of side effects that were really bad, such as SOB, weakness, too tired to think, etc. have been duly noted in my chart with no referrals to other specialist or solutions they may have. Happily I lined up some other specialist, the pulmonogist paid attention to the fluid build up, I resumed taking 10 mg Prednisone, which improved the breathing and the extreme weaknees in my thighs within a few days! My cancer was treated in Bosnia and Croatia for the first 9 years, and when I came back to the US I am shocked and surprised a the lact of treating side effects. Another patient said her Oncologist did suggest she put her pill into an empty capsules, which allowed me to continue with this new "chemo pill" that I was ready to give up. Please keep writing. Jann in Cleveland

Thank you! I am about one year out from my last surgery-reconstructive after bilateral mastectomy. That's after 6 other surgeries in the past 4 years including removal of ovaries too. I had chemo almost 2 years ago. I have 3 kids at home so I don't know if my fatigue is all from that or just compounded by that and my 'different' body now, along with being on anastrazole. Exercise helps but how to find the time and energy is the challenge. And seems no matter what I do I continue to gain weight. Just not how I envisioned my life but I know deep down I am a lucky woman. Just some days are better, and more energetic, than others.

Oh my gosh, thank you. I constantly tell my oncologist about how tired I am and how much I sleep and he looks at the blood work and says, you're fine! I'm five years out from treatment and I sleep 10 plus hours a night and can easily take a two hour nap in the afternoon. I was blaming myself for being lazy. Thank for thinking about this in a non blaming manner!

I too was always tired in the afternoon. I could not kep my eyes open at all! I felt like I had become lazy. I never thought that it could be related to cancer! Last year after becoming a double cancer survivor (breat & ovarian). My oncologist told me to avoid beef as it had the highest amount of hormones & antibiotics. I took it a step further and have eliminated many foods and am now following a clean eating bootcamp that has a meal replacement shake I take 1-2 times per day. I am no longer exhausted in the afternoon. I feel better and more confident that I am on the right path to good health. Thanks for sharing your story and enlightening others to the side effects of cancer treatment.

I was diagnosed with triple negative breast cancer last June, Stage II, Group III. I had a lumpectomy, 16 weeks of Chemo then when my Genetic screening showed the PALB2 Gene I had a double mastectomy. I've had five surgeries in the last year and although I work full time when I get home I am DONE. I also have fibromyalgia and between the two I'm exhausted and weak and am glad to know that I'm not the only one! I don't sleep well and wonder how long I'll be able to function at my current level. Thanks for sharing everyone, knowledge is power!

I am a physician-survivor who began struggling with post-treatment fatigue in the early 1990's, a time when "survivor" was still a new label and post-treatment issues received little attention.
Many patients were having trouble talking about fatigue with their physicians and their loved ones. So I wrote an article that was published in CA-A Cancer Journal for Clinicians to explain why fatigue is such a challenging problem--physically, emotionally, socially--and how I overcame the frustration of post-cancer fatigue.
RESOLVING THE FRUSTRATION OF FATIGUE http://tinyurl.com/ResolvingFrustration
I hope you find it useful. With hope, Wendy
www.wendyharpham.com

OMG, the fatigue after 6 months of chemo for stage 3 colon cancer was unreal. Like you, exercising seemed to leave me worn out and taking Vitamin B had no impact. My endocrinologist for hypothyroid, up'd my synthroid dosage to no avail.
When I started back to work full time more than a year after chemo, I was terrified if I could survive the work week. Thankfully it was mostly a work from home job and a pot of coffee a day would get me through. But when I had to attend a week workshop, I was in a panic. I finally took the advice of my YMCA Livestrong yoga instructor to try acupuncture. I had acupuncture 3 times a week several weeks before the workshop. It really was a miracle, I left the office with a spring to my step. I made it through the workshop with only a few yawns, but no more than anyone else. To this day, I still continue acupuncture for fatigue, chemo induced peripheral neuropathy n just general well-being.

Talk to your Oncologist about putting you on Ritalin. My husband's Oncologist prescribed it to him a few months ago, and he's not as tired. He takes the generic version Methylphenidate 5mg once a day in the morning.
My husband had 2/3 of his right lung removed, along with a lymph node and a few ribs the end of 2009. He had chemo also, and it had been in remission until a year and a half ago. It came back, stage 4 matastisized (4 nodulars)in the pleural (membrane around the lung). They had him on two chemo drugs first few rounds, and he is now on Altima chemo every 3 weeks indefinitely. He has a port.
He was always extremely tired from the chemo. In bed most of the time, especially the week after chemo. He still gets tired, but is so much better since being on Ritalin.

I almost cried when I read the article about fatigue. I thought I was the only one. I am 4 years out from breast cancer --triple negative. My oncologist said it's not from the chemo or radiation after all this time. He just totally dismisses it. My family dr. tried a stronger pain pill for my arthritis and an anti-depressive. It hasn't worked. He also wondered if I have sleep apnea. I don't. Granted I'm 70 but no one I know in their 70's feel like I do. I exercise 2-3 days a week. My husband is on oxygen 24/7 and we both exercise at pulmonary rehab. It doesn't really help.
Thank you SO MUCH for your article. I felt so alone in all of this.